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Title
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Generating trust in biobanks within the context of commercialization : can dynamic consent overcome trust challenges?
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Author
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Abstract
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| Various authors have argued that “public trust” in biobanks is critical for building, maintaining, and sustaining biobanks. However, trust is a complex, multilevel concept. Moreover, biobanks encounter various challenges in responding to the expectations of different stakeholders, which potentially have an impact on their perception of the biobanks’ trustworthiness. For instance, empirical studies have shown that commercialization is a delicate issue in terms of their trustworthiness. This could mean that one scandal in the field may distort carefully constructed policies for generating trust. Apart from advanced governance mechanisms, transparency on issues related to commercialization is, hence, very important. The chapter explores whether “dynamic consent” could be an effective tool to increase transparency, in general and more specifically regarding commercialization issues, as it allows for dynamic follow up, information, discussion and engagement. It starts with a short description of the trust literature and tailors some important concepts from that literature to the discussion on biobanks before delving into more detail into the literature on biobanks and trust and the potential role of dynamic consent for generating trust. |
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Language
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English
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Source (book)
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Global Genes & Local Concerns: Legal Ethical and Scientific Challenges in International Biobanking
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Publication
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Cheltenham
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Edward Elgar
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2019
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ISBN
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978-1-78811-618-3
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Volume/pages
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p. 130-155
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